A clinical trial is a medical research study that aims to find a better way to treat a particular disease or fix a medical problem.

During the trial, the therapy or drug being tested is given to a group of volunteers. Information is then collected by doctors and nurses on how well the treatment worked. Data is also collected on side effects. Doctors use results from clinical trials to decide which treatments are best for patients like you.

Why do I have to sign a consent form to participate in a trial?

Informed consent is one of the most important parts of the trial process. It is important that when you volunteer, you are given all of the information you need to make up your mind whether you want to take part. It is your right to ask as many questions as you want of your doctor or nurse until you are sure you understand what the trial involves. You can also take the information sheet home and discuss it with a family member or friend before you agree to take part. By signing the consent form, you are confirming that you have been given the form and that you understand this information. You should not sign the form unless you understand what you are being asked to do.

All clinical trials are required to be reviewed and approved by an Ethics Committee

The Ethics Committee is an independent group of medical, scientific and legal experts, as well as lay members of the community, who decide if the trial is safe and fair to trial participants. The information sheet you will receive will have the contact details of the Ethics Committee who approved that trial. If something about the trial troubles you and you wish to discuss it with a person not directly involved in the trial, the Ethics Committee can be contacted.

If you choose not to participate in a clinical trial, you will not be treated any differently by your doctor or nurse. It is your body and your health, and you should not feel pressured to do anything you are not comfortable with.

A clinical trial is a medical research study that aims to find a better way to treat a particular disease or fix a medical problem.During the trial, the therapy or drug being tested is given to a group of volunteers. Information is then collected by doctors and nurses on how well the treatment worked. Data is also collected on side effects. Doctors use results from clinical trials to decide which treatments are best for patients like you.

-By being provided with access to information about the trial, you may gain a greater understanding of your disease, and the possible treatments for it.

-By participating in a research trial, you are able to play an active role in your health care.

-If you participate in a clinical trial, you may be given access to treatments or tests that are not available to the general public.

-You may be followed up more closely if you are a trial volunteer, which might mean more or longer clinic visits, or more in-depth tests at those visits.

Other patients in the future may benefit from the knowledge gained during the clinical trial.

How do I know if I’m right for a clinical trial?

The trials select people with specific diseases, with certain symptoms, on specific modes of renal replacement therapy, and on specific medications. Talk to your doctor or nurse about which trials you might be able to be a part of. If there are no AKTN clinical trials that are suitable for you at your clinic, there might be a locally run trial that you can be a part of. Not all patients with kidney disease will be suitable for participating in trials.

How do I sign up?

The first thing to do is talk to your treating doctor or nurse. They will be able to tell you which trials are being run at your clinic or hospital, and which you are suitable for. If there is a trial that you are suitable for, they will guide you through the information and consent process.

Where can I get more information about clinical trials?

The Australasian Kidney Trials Network (AKTN) - A group of nephrologists and other doctors, nurses, researchers, dietitians, scientists and other health professionals who conduct clinical trials in kidney disease. Because of their interest in renal disease and kidney health, they want to find better treatments for people living with kidney disease.

The AKTN's vision is to be an investigator-led clinical research organisation working with the kidney care community to achieve world class, innovative solutions that make meaningful differences to people with kidney disease. To achieve this, the AKTN designs, conducts and supports clinical trials and fosters clinical trials expertise in Australia and New Zealand in conjunction with global collaborators.

All AKTN clinical trials are designed with patients with kidney disease in mind. A patient with kidney disease sits on the AKTN Scientific Committee to make sure AKTN trials consider quality of life, symptoms and treatments important to people living with kidney disease.

Clinical trials - ClinicalTrials.gov is a service of the U.S. National Institutes of Health. It is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

Consumers Health Forum of Australia - The CHF is the national peak body representing the interests of Australian healthcare consumers and works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.

Treatment of Proteinuria Due to Treatment Resistance or Treatment Intolerant Idiopathic FSGS

Purpose: To examine the effect of H.P. Acthar® Gel (corticotropin injection) in adult subjects with idiopathic focal segmental glomerulosclerosis (FSGS) who have failed to achieve remission with, or who are intolerant of, 1 or more previous immunosuppressive therapies.